AIDS, Art & Activism

Early Days

HIV is a spectrum of conditions caused by infection with the human immunodeficiency virus (HIV) , a retrovirus. Following initial infection an individual may not notice any symptoms, or may experience a brief period of influenza-like illness. Typically, this is followed by a prolonged incubation period with no symptoms. If the infection progresses, it interferes more with the immune system, increasing the risk of developing common infections such as tuberculosis, as well as other opportunistic infections, and tumors which are otherwise rare in people who have normal immune function.

While it is believed that the HIV-1 virus which causes AIDS was first transmitted to humans in the 1930s — likely the result of hunters coming in contact with the blood of monkeys in Cameroon — and numbers suggest that there were upwards of 100,000 people living with HIV before the 1980s, the first identified case of AIDS in the U.S. was in 1981. Early cases were called G.R.I.D or “Gay Related Immunodeficiency” and it was believed that only homosexual men were capable of contracting the virus. In 1983, the CDC deemed four groups of people at risk for the virus, a population they called the 4-H Club: Hemophiliacs, Homosexual Men, Heroin Users and Haitians (because many early cases were detected in Haiti).

By the end of 1983, however, researchers knew better and determined that people assigned female at birth could also contract and spread the virus and that more than 3,000 Americans were positive. Of those, more than 1,200 had died. In 1995, AIDS reached its peak in the United States. Complications from AIDS were the leading cause of death for adults 25 to 44 years old. Over 49,000 people in the country died of AIDS-related causes.

Cultural Response

Early misinformation spreading led to much panic and stigmatization of those who contracted the virus and the federal government's refusal to address the epidemic led to dire consequences. Though officials were aware of AIDS as early as 1981, President Reagan did not publicly address it until 1985 and by that time, more than 3,000 Americans had died. The growing spread was dubbed “The Gay Plague” by White House Press Secretary Larry Speaks and the press pool laughed. There were immediate bans on gay men donating blood - a restriction that still hasn’t been fully lifted and only became less rigid during the early days of the Covid-19 pandemic. Travel bans were put in place which were not lifted until 2010 by President Obama. In 1984 Ryan White, a 13 year old boy, was expelled from school for his status. And while early thoughts were that only white gay men were being impacted, it soon became clear that because of disparities in access to healthcare Black people were accounting for a disproportionate percentage of all those living with HIV. In 1997, researchers calculated that the government’s resistance accounted for 4,394 to 9,666 avoidable transmissions.

 While the official and governmental response to the epidemic was slow and insufficient, the artists’ and activists’ response was swift and ultimately, effective. Below are some major moments in art and activism history that changed the shape of the crisis and led the way for many more movements that followed. (There are so many artists and activists that are not included here.)

Since the ‘80s, AIDS research and innovation has made living with HIV and AIDS more manageable. Zidovudine, commonly known as AZT, was introduced in 1987 as the first treatment for HIV. AZT is used in combination with other anti-HIV drugs to treat (but not cure) HIV. Scientists also developed treatments to reduce transmission during pregnancy. In 1996, in Vancouver, researchers at the 11th International Conference on AIDS introduced the concept of highly active antiretroviral therapy (HAART). This regimen requires people with HIV to take a combination of at least three medications daily. HAART, which is commonly known as antiretroviral therapy, became the new treatment standard in 1997. As a result of HAART, deaths from HIV decreased by 47% in the United States. 

The FDA approved cabotegravir (Vocabria) and cabotegravir/rilpivirine (Cabenuva) as recently as January 2021. Cabenuva, which is taken monthly, is the first FDA-approved injectable medication for HIV. By August 2021, the FDA had approved nearly 50 brand-name treatment options for HIV. HIV medications are effective but expensive. A few generic versions, which help lower costs, are also available.

Another innovation  — PrEP, a daily pill — was introduced in July 2012. This medication is used to reduce the risk for HIV from sex by greater than 90%.  According to a 2021 report, around 23 percent of people who would benefit from PrEP were prescribed the medication in 2019. Currently, researchers are using Covid-19 vaccine research to help guide them on the journey to finally finding a cure. 

Early-Stage Symptoms of HIV Infection

Many people — about two in three — experience flu-like symptoms within two to four weeks of contracting HIV. Known as acute retroviral syndrome (ARS) or primary HIV infection, these symptoms are the immune system’s natural response to the virus.

Symptoms include:

• Fever

• Chills

• Rash

• Night sweats

• Muscle aches

• Sore throat

• Fatigue

• Swollen lymph nodes

• Mouth ulcers 

During this very early period, HIV may not be detected by testing. This is because most HIV tests look for antibodies (the proteins the immune system generates in response to the virus) rather than the virus itself, and production of antibodies can take a few weeks. Most rapid tests and home tests are antibody tests. People who have contracted HIV are highly infectious at this early stage, even if they show no symptoms, because virus levels in their blood are extremely high. 

Clinical Latency Stage of HIV Infection

The symptoms during ARS may last for a few weeks, according to the National Institutes of Health. After this point, the infection progresses to the clinical latency stage, a period during which the virus reproduces at very low levels, but it is still active.

Also known as asymptomatic HIV infection or chronic HIV infection, the clinical latency stage typically causes no HIV-related symptoms. 

For people who are not taking any anti-retroviral medication for their infection, the clinical latency stage lasts for 10 years, on average, but it may progress quicker. 

ART, though, can keep the virus from growing and multiplying, prolonging the clinical latency state for several decades. It's important to note that people living with HIV in the clinical latency stage are contagious and can still transmit the virus to other people. But, as the CDC notes, people who take ART exactly as prescribed and maintain an undetectable viral load have “effectively no risk of transmitting HIV to their HIV negative-partner through sex.” 

Late-Stage HIV Infection: AIDS Symptoms

The final stage of an HIV infection is AIDS, which occurs when the immune system is severely damaged. It's diagnosed when your CD4 cells are very low or when you develop one or more opportunistic illnesses, such as pneumonia or tuberculosis, or specific cancers as a result of an HIV infection. 

People with AIDS may experience:

• Rapid weight loss

• Recurring fever

• Profuse night sweats

• Pronounced fatigue and weakness

• Prolonged swollen lymph glands

• Chronic diarrhea, which lasts more than a week

• Sores that develop in the mucous membranes of the mouth, anus, or genitals

• Blotches (red, brown, pink, or purplish) on the skin, under the skin, or inside the mouth, nose, or eyelids

• Neurological issues, including memory loss and depression

Many of these symptoms, particularly those that are severe, may be related to other opportunistic infections that develop due to the weakened immune system. 

These opportunistic infections can include tuberculosis and pneumonia, as well as candidiasis (fungal infections caused by yeast), when the fungal infection affects the esophagus or lower respiratory tract.